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Graft vs. Host Disease: The Time Has Come

We have begun the next Challenge as GVH arrived today. I haven’t been feeling particularly well over the past few days, I’m on day 5 of a headache and my lungs have been causing some discomfort since the weekend. Nothing too major, nothing tough enough to make the ER a requirement, I just felt “crappy” as one of my former nurses would say. I was running a bit of a fever last night and was half expecting to peak enough that a late night hospital visit would have been necessary, but I settled and had a pretty good night’s sleep.

Went to the hospital where I had blood taken and then waited to see my Doc. First thing he wanted to do was hear how I was feeling and then he asked me to take off my shirt so he could have a look at my skin… and there it was just like that, the makings of a rash, little red dots over my chest, stomach and arms. Weren’t there yesterday, but they are there now and so we begin a new part of this Journey.

This is where my treatment becomes much more of an Art than a Science, as controlling GVH is an unknown. Some GVH is not steroid responsive, my original GVH was and that is a good thing. Right now we are hoping that this GVH will be responsive as well. What responsive means is that we are able to control the severity and keep it from getting out of control which can happen. As I have said, GVH is a necessary evil, it’s something we want to happen and we want a “comfortable” amount, but we don’t want too much.

Balancing between enough and not too much, that is a tough spot, and it is an area of this treatment where the Medical World is still (as with many things) developing the best approach to this situation. It is a gray area, which as a Patient I have come to learn is the rule rather than the exception in medicine. Doctors aren’t miracle workers, they use good judgment and experience to help them work through challenges, but I never expect or get guarantees. Life is not about guarantees, which I know we have covered in previous messages.

So in response to today’s development I have started Prednisone and a couple of other meds. Nothing major yet, as I am taking 25 mg of Prednisone a day, a far cry short of the 220 mg/day that I started with the first time I had GVH. Our intent is to control not eliminate this GVH and hopefully the 25 mg/day will do that. I also had a chest x-ray done this morning to ensure that I’m not brewing pneumonia or another lung condition that will cause me additional trouble. My x-ray looked good, I’m sure my chest will be monitored closely and I’ll be back at hospital on Friday to see my Doc and have blood taken.

Inside I feel some relief as this was a place we wanted to reach, it’s an important destination on this Journey. How much GVH we want is unknown for sure, and inside I feel that how much I get will largely be determined by forces other than my Doctors, my medicine and myself. That is where my faith comes in, and it is as strong as ever. Graft vs. Host Disease is a disease that kills Patients, and it is believed that some Patients who die do so because they didn’t get GVH or they had too little. It is a disease that Docs have learned is a “necessary evil”, it brings both good and bad things to the table. And the belief is that some level of “bad” stuff in the short-term will help foster “good” things in the long-run.

I’m hoping for a solid amount of the “bad” stuff, what that amount is, is unknown, but I have faith that it’s going to happen. Just like I have faith that it will help foster the “good” things in the long-run.

I’ve got more thoughts and feelings in other areas floating around today and tonight, and I’ll be back with those soon. Take care, and…


Live Life. Love Life.


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